Going Blind Documentary: Shedding Light on Living in Darkness

By Evra Taylor

American filmmaker Joseph Lovett sits in front of a Humphrey Visual Field Analyzer and makes a searingly honest statement: “The prospect of going blind terrifies me. And my way of dealing with fear and terror is to confront it.” Lovett’s way of confronting blindness was to make the documentary Going Blind, a film tracking his vision loss and that of others.

Lovett has been losing his vision to glaucoma – a condition he aptly describes as ‘a thief in the night’ – for over 20 years. When he realized that his doctors were not comfortable discussing sight loss with him, he started talking to others who had lost their sight. In the film, he profiles a number of people, including an Iraq War veteran and an art teacher whose near-total vision loss has forced her to discover alternate ways of expressing her art.

Acting as the film’s narrator, Lovett shows his subjects navigating the densely populated streets of Manhattan, where he lives, and delivers a cogent, almost dispassionate explanation of glaucoma and its workings: the function of the optic nerve, his diagnosis and vision loss, and its effect on his life.

Lovett says the film was intended for a broad audience, including sighted individuals, so they can better understand what life with vision loss is like, and physicians, so they will better understand their patients’ needs and concerns. Of course, Going Blind is also a film for people who have lost their vision, “so that they will become aware of all the help that is available to them in terms of training and new technology.”

People tend to grow up with a fear of blindness because we know so little about it, according to Lovett. “The fear turns into a prejudice against the blind. Sighted people tend to ignore blind people — they don’t talk to them, don’t engage with them and don’t learn about their lives. As a result, they remain ignorant of how people can lead totally regular lives but in a different way without sight. However, this can be turned around if you’re lucky enough to meet the incredible people I met while filming Going Blind. ”

Reaction to the film has far exceeded Lovett’s expectations. More than 200 organizations have purchased it and it has had multiple screenings by community groups, libraries and universities. (CNIB presented the official Canadian premiere of Going Blind in January 2011 at Toronto’s Scotiabank Theatre.) It is also being used for physician training and will air on U.S. public television in October 2012.

Said CNIB President and CEO John Rafferty: “It’s a great film that depicts both the emotional challenges and technical needs of someone learning to cope with vision loss. The film helps to show that – with the right support – it really is possible to see beyond vision loss, whether you’re a filmmaker, a war veteran, a teacher or anyone else”.

CNIB has described Going Blind as a film about hope beyond vision loss, even for people who, like Lovett, have made lives for themselves working in the visual world of television. In an interview with USA Today, Lovett recounted a visit to an art gallery that brought this realization into focus.

“I found myself in front of a very large canvas and looking at one aspect, one area of the canvas, that was very beautiful; (the paint was) very worked. I wouldn’t have noticed that detailing and wouldn’t have remarked on [the artist’s] craft and skill if my vision was working,” he said. “When you’re losing your vision and you’re paying attention, you begin to know what you don’t know and what you don’t see. You know that you should look deeper.”

Toward the end of the film’s preview, Lovett poignantly asks, “What will it be like to no longer be able to read a newspaper?” The preview concludes on a positive note with his statement, “What was once unthinkable is actually very doable, and it’s time for all of us to come out of the dark about vision loss”.

A preview of the film can be seen at www.goingblindmovie.com, along with Going Blind and Going Forward, the film’s Outreach Toolkit that shows step-by-step how an individual or organization can use the film to best serve their community. The Toolkit explains how to reach the largest number of people using media and news outlets to publicize a screening and draw an audience.

Going Blind was produced with major support from Pfizer Ophthalmics and The Readers Digest Partners for Sight Foundation.

Tamara Tedesco: Living Life on the Edge Pays Off

By Evra Taylor

Three words – optic nerve glioma – don’t exactly roll off your tongue but it’s a condition Tamara Tedesco has lived with since infancy. Vancouver-born Tedesco was diagnosed with the condition at 18 months when her parents received what she calls a quick “spot-on” diagnosis.

Optic nerve glioma is an uncommon condition involving tumours that press on the optic nerve, causing blindness. In Tedesco’s case, there is a benign tumour on the optic nerve of each eye. She underwent 18 months of chemotherapy to shrink the tumours, an experience she “sailed through,” considering the trauma of both the disability and the treatment.

Now 26, Tedesco describes the treatment experience in a way that reflects her positive attitude. “People ask if it was difficult to go through. Actually, it wasn’t. I have no bad memories, apart from feeling nauseous much of the time I was on chemotherapy. My parents definitely had a harder time with it than I did.”

As often occurs with childhood illness, Tedesco thought her condition was just part of life because it was all she knew. “Being so young, I thought my reality was normal and that every kid had to do the things I did.” In one instance, her lack of sight proved a blessing. “When my hair started falling out, I couldn’t see that other peoples’ hair wasn’t falling out, too,” she said.

Tedesco now has roughly eight per cent vision in her right eye and light perception in her left. Her peripheral vision is completely gone, resulting in tunnel vision. Tedesco uses the word “lucky” to describe the fact that her condition is stable. She undergoes an MRI every two years, each of which has shown that the tumours are shrinking slightly.

Overall, Tedesco’s life experience has been positive. She attended mainstream schools and began learning Braille around age four.  She enjoyed school and had no trouble making friends. “I wasn’t shy. There was fear, curiosity and awkwardness on the part of other kids but I was a bit of a novelty and learned how to use my differences to advantage.”

Tedesco attended the British Columbia Institute of Technology (BCIT), graduating with a certificate in marketing and communications in 2010. She currently works as a communications coordinator, handling public relations, media relations and community outreach for the British Columbia and Yukon office of CNIB in Vancouver.

“This is exactly what I wanted to do. I really enjoy the fact that the work is different every day,” Tedesco remarked. Her future career plans include continuing to work in areas where her excellent communication skills can be put to use. “I can really get behind the idea of increasing independence for people who are blind or partially sighted”.

The hallmark of Tedesco’s life is her ability to advocate for herself – to look honestly at her needs and seek assistance when necessary. Now, she hopes to help others do the same. “By the time I reached post-secondary school I really knew how to advocate for myself. I took my laptop to class and asked the teachers for assistance. Whatever accommodations I requested were granted”.

In terms of navigating her life, Tedesco relies on the guide dog she has had since age 15. (At the time, she was the second youngest person in North America to have such a dog.) She describes the experience as “life changing”, increasing her independence tremendously. She counts herself fortunate to have parents who were extremely positive role models. “They encouraged me to try things and not to be afraid to take risks.” Tedesco did everything other children did, including climbing trees and riding a bike. Ever the daredevil, she also likes to rock climb and swim – activities she would, “never recommend to other blind people. It’s the way I was raised but it’s not for everybody.”

Tedesco’s self-advocacy takes the form of offering this advice to other blind or partially sighted individuals: don’t let blindness get in your way but be aware of the need to adapt your activities and of the effects blindness will have on your life. “I didn’t realize until just a few years ago that my blindness tires me,” she noted. “I wear out faster than other people so I take a daily 15-minute nap to recharge my batteries.”

As part of her commitment to defend the rights of the disabled and advocate on their behalf, Tedesco is a member of the board of directors of B.C.’s Access for Sight Impaired Consumers (ASIC), an independent, consumer-driven advocacy coalition addressing issues affecting people who are blind, sight impaired or deaf-blind.

“Allowing yourself to accept help is important. People are willing to make things as easy for disabled individuals as they can. It makes them feel good – and they certainly don’t look at you as less of a human being if you ask for help. This is something the blind person has to discover for himself.”

Tony Max: Multidisciplinary Artist Finds Healing in Self-Expression

By Evra Taylor

Vancouver artist Tony Max is a renaissance man of the arts. He has crafted a living through a lifetime of artistic endeavours, including writing, graphic design and painting. In fact, Max is so ambitious in continually taking up new artistic pursuits that his efforts sometimes collide in terms of scheduling.

Born and raised inLondon,ON, 54-year-old Max has had open-angle glaucoma since 1989, the unfortunate result of several cataract surgeries he underwent as a teenager in the mid-1970s. At the time, he had 10 percent vision and was considered legally blind. Following the surgery, Max had 20/40 or 20/50 visual acuity, occasionally reaching 20/30, which is his current state. In addition to glaucoma, he has a lazy eye and has had detached retinas three times.

Max underwent life-changing glaucoma surgery at age 13, an event he describes with great emotion. “The moment I got my vision back was very dramatic and I’ll always remember it. When the doctor removed the bandages, what I saw was just amazing. Everything was bright, colourful and full of detail. I innocently said to the doctor, ‘I can see all the lines in your hand!’”

Oddly enough, Max doesn’t know if he was born blind. His doctors contend that his condition was congenital, but his mother disagrees. “I was a premature baby and my mother speculates that my blindness was caused by the intense lights of the incubator.”

Like many handicapped individuals, Max faced discrimination and rejection early in life. As a student, he had to drag his desk to the front of the classroom to see the blackboards, an experience he found very humiliating. “I felt like a freak because I was the only kid in the class with a visual impairment. I was teased a lot. The other students called me ‘batty’. It was extremely traumatizing to be singled out like that.”

As often happens in children with disabilities, Max spent a lot of time on his own as a child, enjoying solitary activities such as drawing, reading and writing. “I think I wanted to be alone because I was ostracized by the other kids at school.”

Sharing an emotional nugget of self-awareness, Max stated, “The isolation of those years made me more sensitive to creative things and objects of beauty. That is what led me to becoming an artist.” Unlike many in the artistic world, who find it difficult to carve out a living, Max has become a success in his chosen field. His artwork is sold in more than 130 Canadian galleries and is collected in 21 countries around the world.

Max is nothing if not eclectic, but most of his interests lie in the artistic realm. After dropping out of fine arts school at Fanshawe College in London,ON, he obtained a degree in journalism, graduating with a BAA (Bachelor of Applied Arts) from the celebrated journalism program at Toronto’s Ryerson University. In the early 1980s, he relocated to Vancouver, where he concentrated on graphic design, founding his own communications firm in 1996.

Until 2002, Max was involved with a cornucopia of projects: writing, editing, proofreading, illustration, graphic design, and communications project management. Then he decided to devote himself to painting. Max creates acrylic paintings and archival, original prints (giclees) primarily depicting Vancouver and southwestern British Columbia, as well as botanical images. While his vision impairment doesn’t affect his work, he couldn’t be a wildlife artist, for example, because it requires fine detail.

Max misses his other pursuits, but like many of us he has had to make hard choices about where to concentrate his energies. “There is simply not enough time to do everything. I’d like to be a musician as well, but those plans are on hold for now because I’m afraid that if I pursue music, I’ll get distracted from my art.”

One theme of Max’s life seems to be moving from art to writing and back again. He claims, however, that he was neither a good artist nor a good writer when he was younger which, he says, shows that one can develop creative talent. “I tell people that the way to get good at being an artist is to devote several thousands of hours to the craft.”

Max’s diverse interests have led him to pursue far-ranging activities such as joining the Editors Association of Canada and volunteering for environmental causes like Sierra Club of Western Canada. His plan for the future is simply to continue what he’s doing. But, in typically ambitious form, he adds that he is interested in digital photography and hopes to find time to get involved in music, as well. “It’s also important to me to support the creative community by educating the public about art and the life of an artist, which I do through my web site,” he explained.

The stalwart artist advises other visually impaired people to be very conscientious about taking their medications and going for medical check-ups as required. In addition, he suggests remaining open to complementary medicines, citing glaucoma studies showing that exercise lowers intraocular pressure. He also pointed to a five-year study on vitamin B12 that demonstrated improved visual fields in glaucoma patients.

Max is equally enthusiastic about the care he has received. He extends heartfelt thanks to the doctors and other medical staff who work in the ophthalmic field. “It is because of them that I have my sight. I would probably be blind if it weren’t for the treatment I’ve received.”

To view Tony Max’s artwork, visit www.tonymax.net.

Blindness Spurs Teacher on to Bigger and Better Things

By Evra Taylor

Anyone who starts a discussion with, “It’s an honour to be interviewed,” has a degree of humility seldom seen in pioneers and visionaries. But then, Melanie Cooper is an exception to the rule in many respects.

In 1995, at age 21, Cooper, a Mississauga native, was diagnosed with optic nerve atrophy which caused her to lose the sight in her left eye. She had optic nerve pressure on her right eye, as well. Cooper underwent optic nerve fenestration to relieve pressure on the optic nerve of her left eye and three days later, she suffered a stroke. She was in a coma for two weeks and when she emerged from it, she was blind and paralyzed. Said Cooper: “I didn’t fit the profile for a stroke and no one wanted to say the ‘s’ – stroke – word to me.”

Cooper had to relearn everything from scratch, including the everyday activities most of us take for granted. After extensive rehabilitation and a life skills program at CNIB’s Intensive Rehabilitation Training Centre (IRTC), she took part in an orientation and mobility program that taught her to use a white cane and to enhance her hearing skills in order to compensate for her lack of sight. Cooper now has 20/200 vision in her right eye and 20/400 in her left one. She is able to see light and dark, as well as shapes, and she can read size 14 font in her right eye if she holds the paper close to her face.

During her rehabilitation period, Cooper’s social worker was concerned because, unlike most other people in her situation, she didn’t experience depression and didn’t cry. She recalls that instead, she kept saying, “I have to get back to normal,” insisting that she would return to university in a few months. “Those good thoughts kept me going. Although I had to move back home, I had only one day of pity. I think my sisters would have kicked my butt if I’d fallen into a depression.”

Cooper’s unfailing optimism stood her in good stead as she moved on with her life, pursuing a career in teaching – her lifelong passion. She enthusiastically attended teachers college through York University, asserting that, “Just because I’m vision impaired, I don’t think I should stop living my dream.” Her bold achievement was unprecedented. Armed with a BA in education, Cooper became the first legally blind student to graduate as a teacher in Ontario in 1998. In fact, she placed at the top of her class. But despite her high standing, prospective employers would not hire Cooper because they viewed her blindness as a liability.

Undaunted by the rejection and not one to have barriers imposed on her, Cooper forged ahead to realize the true vision for her life, one which extended far beyond the classroom: she wanted to open her own school for the vision-impaired because at the time there were no such academic programs available at the post-secondary level for adults with disabilities in Peel Region. Cooper knew she could fill the gap and give back to the blind community in a meaningful way as someone who had been there herself.

On June 25, 2010, Cooper launched the Connect Learning Centre in Mississauga, ON. The centre offers life skills programs encompassing such subjects as money management, job skills, social skills and classes on ways in which the disabled can advocate for themselves. Cooper’s clients include a wide range of individuals, including those with vision loss, intellectual disabilities and cerebral palsy, along with stroke survivors. Cooper stated, “The benefits of these programs are tremendous. They impart confidence to the participants.” Currently, she has a staff of four teachers and sees roughly 18 clients each week. “All of the staff have had some involvement with disability. To work here, the criterion is that you have to be as passionate as I am about helping these people.”

Cooper points out that independence means different things to different people. For some, tying their shoes is a goal while others need to improve their computer skills so they can get a job.

Acknowledging that it takes her longer to accomplish certain tasks than a sighted person, Cooper admits to having what she calls “frustration days” caused by her lack of independence because she cannot drive. She strongly dislikes the idea of having to depend on others.

The support of family and friends has been central to Cooper’s ability to thrive. “Everyone needs to be surrounded by positivity and love. I have several vision-impaired friends and a friend with the same condition as mine understands what I’m going through. In order to fully understand a disability, you’ve got to have it and live it.”

Cooper believes that the need for the type of assistance she provides “is huge” and she has had requests for expansion to other areas of activity. Her ambition is to make the learning centre as successful and sustainable as possible and to help as many people as she can. “I want to create a ready-made ‘program in a box’ that can be used in other communities,” she says, adding: “I said to my mom that things happen for a reason and that my loss of sight is the best thing that has ever happened to me because it changed my attitude and made me truly appreciate my life”.

For more information, visit www.connectlearningcentre.com.

Roger Alarie: Happily Dancing his Way through Life

By Evra Taylor

What’s astonishing about some people is that you just can’t keep them down – literally. That is the case with Roger Alarie, who manages to keep spectators’ eyes riveted to him on the dance floor as he moves deftly to the beat of salsa, merengue and a repertoire of other dances he has been studying. Learning the varying rhythms and techniques of Latin and ballroom dance can be difficult enough, but when you’re blind, how do you navigate around a large floor filled with sighted dance aficionados?

The answer lies in Alarie’s laudable life perspective. At age 65, he views life as an array of unlimited possibilities. In fact, for him the word disability doesn’t exist. He lives his life unconstrained and uninhibited. Like many visually impaired individuals, his attitude toward life in general, and to trying new things in particular, is far more daring than that of many of us sighted folks.

The majority of blindness is caused by conditions such as macular degeneration, retinitis pigmentosa and glaucoma; however, Alarie’s case falls under a much less common etiology. He was born via forceps delivery, at the time a somewhat common practice during difficult deliveries. The forceps pressed on his optic nerve, causing progressive loss of sight.

Remarkably, Alarie has never felt angry at the doctor involved, nor at anyone else, for that matter. While he admits to having felt frustrated and depressed for the first year or two following his complete loss of vision at age 25 – and before he became better-equipped to continue his activities of daily living – Alarie has never let his impairment get the best of him. He still likes cooking and he relishes sharing recipes with his live-in girlfriend, Pauline Normandin, a retired school teacher. “I can do everything everyone else does, just in a different way,” he remarked.

Alarie was born in Montreal at a time when the integration of children with various types of disabilities into mainstream schools was not the hot topic of discussion that it is now. He attended the Institut Nazareth and, later, Institut Louis Braille; the two schools have since merged.

In terms of his life’s vocation, what is most interesting is that Alarie’s blindness proved an asset rather than a liability. For 31 years he enjoyed working for General Foods, which later became Kraft Foods, as a coffee taster. The company actually seeks out blind individuals as tasters because their blindness augments their sense of taste. It also ensures that they aren’t influenced by the sight of the oil in the coffee.

Years ago, Alarie’s adventurous spirit took him to the ski slopes. He used to participate in cross-country skiing, but stopped when it became clear to him that it was “a bit dangerous. When the guide said to veer left or right, it was tricky for me as a blind person”.

After a particularly scary fall on the ski slopes, Alarie decided to switch the focus of his life. Upon retirement from work 10 years ago, he was free to pursue his life’s passion, dancing, which his late mother had enjoyed before him. Joined by Normandin, his sighted partner in life, as well as in dance, Alarie embarked on an adventurous journey few of us would dare to take. Motivated by his experience with and love for square dancing, which he shares with Pauline, three years ago he contacted the LaSalle branch of the well-known Arthur Murray Dance Studio to see if they would take him on as a student. At the time, Alarie was particularly interested in learning salsa.

The owner of the dance studio, Harry Gregoire, explained that he had never before tried to teach a visually impaired person how to dance. Gregoire knew it would be a challenge but decided to accept Alarie into a comprehensive dance program entailing individual and group lessons, along with practice sessions several nights a week. A true devotee of his chosen hobby, Alarie doesn’t engage in much social activity besides dance because he’s busy four to five times a week high-stepping it on the dance floor.

Alarie exudes a zest for life that is infectious: he enjoys sharing with others his view of living with blindness. When asked how he would advise other vision-impaired individuals, he responds, “I would tell them not to be afraid of trying new things. When you have a passion for something you just have to do it. I’m extremely happy to have a dance teacher who has shown me tremendous patience, since it takes me longer to learn the steps than a sighted person”.

Always the optimist, and completely content with his life, Alarie says, “Everything inspires me because I’m happy with my partner. My blindness didn’t bother her or intimidate her in any way. She needed me and I needed her.”

Fortunate to have found the love of his life, Alarie is satisfied with his lot and wouldn’t change it. “Everything inspires me because I’m happy with Pauline”.

John Rae: A Powerful Advocate for Canadians with Disabilities

By Evra Taylor

In some instances, the quality of a person’s voice provides a clue to their personality. In the case of John Rae, a booming voice reflects an equally strong presence and a gripping message to boot. The 62-year-old Toronto native has devoted his life to representing blind and disabled Canadians as a speaker, writer and, most predominantly, as an advocate for the rights and abilities of people like himself.

At around age 5, Rae was diagnosed with retinitis pigmentosa.  He was subsequently told that his vision would remain constant but it didn’t. “Many doctors are unable or unwilling to tell patients the truth about their condition,” he says. “They feel their role is to cure their patients and they’re not able to deal with disabilities. As blind people, we’re not sick and we don’t need to be cured. What we do need are opportunities to succeed and alternative techniques to help us do so”.

Rae describes experiencing the characteristic stages of retinitis pigmentosa: loss of colour perception, night blindness, and gradual loss of vision, followed by complete loss of vision. He says that unlike many people in the same situation, he escaped the emotional trauma usually associated with vision loss. Instead, he has a practical mindset. He received only minimal orientation and mobility training and he feels strongly that this type of training should be a requirement for the vision-impaired and should be provided at an earlier age than it usually is.

One rarely talked-about issue regarding living with a vision impairment is important to Rae: that of an overprotective home environment and the inadvertent harm it can cause. When he found himself faced with this predicament, he chose to leave home to attend theUniversityofWindsorand gain his independence. Rae contends that it is important for parents to have high expectations of their children, “but many of us have had to fight to overcome the effects of over-protectiveness and having a sighted person to do things for us. Being able to advocate for yourself is a skill that stands a person in good stead in school, at work and in community life”.

While he studied history and political science, Rae’s true passion was law, until he realized that, “Perry Mason and the practice of law have very little in common”.  In addition, he explains, “It was more difficult to obtain books in alternate formats back then – in Braille, tape or audio form, for instance. Braille is a blind person’s road to literacy. If you’re studying law, where every comma can make a significant difference to the interpretation of a text, you’re going to need Braille”.

Rae retired from full-time paid work six years ago. However, true to his heartfelt calling, he relishes his career as a civil servant, an active union member and a community advocate. His vast experience included working forOntario’s Disability Support Program (ODSP), which reports to the Ministry of Labour, and the Employment Equity Commission. That was followed by several years with the Accessibility Directorate of Ontario. Currently Rae is a full-time volunteer board member and first vice-president ofAlliancefor Equality of Blind Canadians. He also serves as the first vice-chair of the Council of Canadians with Disabilities and is active with the Ontario Disability Support Program Action Coalition, an advocacy group that is seeking improvements toOntario’s social assistance program for individuals with disabilities. He focuses on policy work, speaking, writing and advocacy, trying to change the way in which blind people are portrayed.

Much of Rae’s time is focused on issues such as fighting poverty, access to information, and accessibility regarding web sites and transportation. “We’re trying to reduce barriers in our way. Unfortunately, new technologies have imposed several new barriers such as airport kiosks with touch screens which blind people cannot operate. On the plus side, a growing number of elevators have Braille or raised numbers and some ATM banking machines feature speech, allowing a blind person to bank independently”.

Rae is an avid traveller and has sojourned to 30 countries. He feels it is extremely important for blind individuals to travel. “Since we can’t see, we need to absorb the smells and sounds of a locale,” he explains. Rae also points out that because vision-impaired individuals cannot rely on photographs as travel souvenirs, travelling with a tour guide who talks a lot provides tremendous information about the locale. In the same vein, Rae loves touring art galleries and museums because each person viewing a work of art describes something different to him, allowing him to piece together his own picture.

This active spokesman encourages people to get involved with consumer groups and organizations for individuals with disabilities in their area. The Alliancefor Equality of Blind Canadians publishes the national magazine The Canadian Blind Monitor, available at the organization’s website: http://www.blindcanadians.ca/. The publication profiles blind, deaf-blind and partially sighted individuals and serves as an inspiration for people of all circumstances to be the best they can be and to define success on their own terms.

Rae states emphatically: “Our advocacy movement is always in need of new workers. The greatest legacy of the disability rights movement is the ability to participate in policy development, making recommendations on a collective level that will affect our lives. On an individual level, I see the personal growth in individuals who have done that.”